There's an App for When Mommy Is Away on Business

I am leaving this afternoon for two weeks of whirlwind international and bi-coastal conferencing. If you're going to be at the March 5th National Autistic Society conference in Harrogate, UK, where I'll be talking iPads & apps; or at the March 7th UCSF Developmental Disabilities Conference in San Francisco, where all four TPGA editrixes, myself included, will be discussing Thinking Person's Guide to Autism, social media, community, and outreach; or at the UN Foundation's Shot@Life Champions Summit to discuss vaccine policy and outreach in Washington DC March 9 - 12, please do say hello. (If I was to wear a communication badge, it would be Green, as perfectly outlined by ASAN -- I am not great at initiating conversations, but am happy to chat if approached.)

My husband and mother and a whole squadron of friends and helpers are covering for me -- the documentation for How To Run This Household When I'm Not Here is seven pages of 10 point text. So I'm not worried about being gone, and am profoundly grateful to everyone involved. I am worried about missing my family, though, and having them miss me.

So of course I made Leo a Kid in Story interactive book about going on a trip, where I'll be, why I'm going, how long I'll be gone, who will be with him while I'm gone, and that I will definitely be coming back. He liked the story, especially the part about me going on a train in England (that Thomas the Tank Engine conditioning perisists, it does). Since I will be 8 hours ahead of Leo for the first week, FaceTime will not always be an option. But with the Kid in Story app, he can independently see my picture, hear my voice, and reassure himself that I'll becoming back soon -- as many times as he wants to reassure himself. I also made him a bunch of KiS versions of his favorite books, so I can "read" them to him even when I'm not there.

I talk about the Kid in Story app all the time -- even in Bay Area Parent just this week -- with good reason. It's an affordable, easy-to-use story creation app. And its free companion Reader app lets you share any story you've made with any person who has access to an iDevice. It took me 30 minutes, tops, to create a nine-page story with custom photos, text, and voiceover, and then share it with Leo's grandmother, dad, and teacher. Leo will be able to reassure himself I'll be coming back, wherever he goes. And knowing he'll be reassured makes it less difficult for me to leave his side for such a long stretch.

The Problems With "To The Woman And Child Who Sat At Table Nine"

Leo loves going to his favorite restaurants

A few thoughtful souls have forwarded me the Anti-Jared story about the restaurant manager who treated an autism family with kindness after another table complained about their noise. Here's the heart of the story, from the manager's perspective:

"I started to walk to your table. You knew what I was going to ask. You saw the table I just spoke to pointing at you. I got to your table and you looked at me. You wanted the first word. You said…

"'Do you know what it is like to have a child with Autism?'

"You were not rude when you asked the question. In fact, you were quite sincere. Your daughter could not have been more than five years old. She was beautiful and looked scared that I was at the table. She looked like she thought she was in trouble."

I did not "like" this story on Facebook, or share it, and I wish you wouldn't share without a comment, either. Why?

I appreciate stories about kind people doing nice things, but I would have handled the situation differently than the autism parent in the story:

• I certainly wouldn't say or imply anything negative about autism or being Leo's mom in front of Leo.
• Nor do I want people to feel sorry for me because Leo is autistic; he is awesome and I want people to know that. 
• It's so important for people like Leo and families like ours to be out in public, without proactively or automatically feeling shame, or the need for social approval. 
• However -- If Leo needs accommodation, or if we are disturbing people and we did not notice, I would hope both Leo and I would respond appropriately, in the moment. 

I hope the mother in the story finds some positive, acceptance- and understanding-focused community. She seems like she could use it. I'd suggest you visit and share the following Positive Autism Parenting Sites:

• Diary of a Mom
• Parenting Autistic Children With Love and Acceptance
• Brenda Rothman: Mama Be Good
• Emma's Hope Book

And, for the takeaway: Stories like this, in my opinion, are reinforcing pity by smothering it under feel-good. They reinforce the social segregation of autistic people and autism families. And that's not the world Leo or his autistic friends or our autistic families deserve to live in.

The Intelligent Way Leo Hauls Trash Cans

Hauling trash cans at our place is a bit of a pain. The cans are large and heavy, and they need to roll down a long, steep driveway. Most smaller people haul them they way the girls are doing in this picture -- backwards.

Adults, however, turn around, push their can down to the position of Mali's can, and hold and pull it behind them as they walk forward down the driveway. All of this is fascinating to you, I'm sure. But it's important background information.

Because yesterday Leo helped me haul the cans down the driveway. And instead of wrestling with his can, trying to push it down the driveway, or defaulting to the girls' backward-pulling walk, he stopped for a moment, carefully observed the way I had positioned my own can, and then imitated my pulling technique exactly. I did not give him any instructions or prompts -- he did this all on his own.

You could almost see the intelligence crackling and sparking around his head. He was thinking, and thinking hard, and problem solving, and doing it independently. It was a small moment, but it struck me deeply. It's the kind of demonstration of ability that tends to get overlooked, precisely because it was not communication-based. And it makes me wonder exactly how much of an iceberg Leo is -- what we can see of his ability, as opposed to what we can't see. And how frustrating that must be to him.

It's one of the reasons he's in the middle of a full AAC evaluation -- to ensure that he has the opportunity to demonstrate what he knows, and what he can do, and tell us about it to the best of his abilities. So he can tell us what he wants, how he feels -- so he can communicate with us, and everyone else, on his terms. To the fullest extent of his terms.

I'm not banking on an Ido-like communication breakthrough -- though that would be wonderful (for Leo most of all) -- because Leo is Leo, and should not be held to anyone else's standards. But we owe it to him to find out exactly what those standards are. I hope we don't let him down.

Feliz 2014

This video is how I want to remember 2013. All of our family, together with extended family, delighting in life and each other's company. Our family had so many amazing times in 2013, and had so much to be grateful for -- not the least of which was the people in our lives, whether connected by blood or choice. Tardily wishing you a happy 2014.

Please Apple Please Apple Please Please Please

Waiting for lunch at Duarte's

Obviously, we are iPad fans. And I enjoy talking about how helpful iPads have been for Leo, and how they can help Autistic people of different ages & abilities.

However. Just as many standard iPad features (e.g., large touch screens) are surprisingly useful for kids with disabilities -- and that's not even getting into Apple's extensive built in accessibility options -- others features could still use a bit of tweaking.

So here's one option I'd like to see: turning off deleting videos in iTunes. The compulsiveness that accompanies Leo’s autism means he cannot stop himself from systematically deleting every last one of his favorite iTunes videos. He does this because deleting items on the iPad is fun! But then, crap, all the videos are gone. This is ... bad.

We can restore all purchased videos, of course, but it takes time, and sometimes it would make a world of difference to him if his favorite videos were always there when he needs comfort and familiarity and control (iTunes allow him to skip straight to and loop his favorite scenes) to get through a difficult patch. I do not think he would be upset about not being able to delete videos, he adjusted quite quickly to not being able to delete apps once that function was enabled. But if the option to delete is there, oh yes, he's going to take it.

So I do wish Apple would create an option to turn off deleting iTunes items, just as we can turn off deleting apps, because I doubt Leo is the only helplessly self-thwarting video-loving autistic iPad user in town.

Which iPad features do you wish were tweaked or changed for an even better user experience?

Mali Asked Me What "Retard" Means

...because one of her friends at school uses "retard" as a casual pejorative. I suspect she already knew; she is nine after all. But this is an age where one's big kid ability to take in and process information is often at odds with one's little kid assumptions that the world is entirely a good, safe, and happy place. So here is what I told her:

'Retard' is a word used to make fun of people like your brother, people with intellectual disabilities. It is an awful word, and people who know better should not use it.

She asked me what to say to her friend, and I told her she could try the following:

1) 'Retard' makes fun of people like my brother.
2) So it hurts my feelings when you use that word.
3) So please do not use that word.

She'll be home in a few hours. We'll see how it went. And I think I'll have her watch the Not Acceptable PSA, even though it will further puncture her safe happy assumptions bubble.

What would you have said?

Nine, for the Last Time

This little girl turned nine while we were in Mexico last week, surrounded by family plus a chorus of nice waiters who then got attack "abrazos por todos."

 

This little boy turned nine at a bouncy house place near his home, surrounded by family and friends. We sang him "happy birthday" for the rest of the week by his request.

This little girl turned nine in Cambodia, with just her mother and a chorus of clacking crabs on the dark beach nearby.

And this mother is wistful about her last year of having a little kid. I was reflective during my entire ninth year, mulling over the gravity of transitioning from single to double digits, and wonder if Mali feels the same way.

And I think we were able to give all three of our kids happy and memorable ninth birthdays. The mostly atrophied but still functioning, finger-wagging Catholic part of me hopes they feel as lucky to have such fun celebrations as I feel to be their mom. The rest of me just hopes they remember their ninth birthdays as pretty good days.

Babymouse: The App!!

App-loving Babymouse fans, your wait is over: Everyone's favorite slightly neurotic rodent is now available to play, via both iTunes and Google Play. Let iDevices and Android tablets alike rejoice. Even better, the app is free!

And really good, according to my own wee Babymouse fan. The app uses excerpts from the Babymouse graphic novels as the basis for some seriously  fun word matching, guessing, and spelling. Or, according to the app summary:

Playing the Android version on our Xoom

"Pop the Pic World Puzzle Game based on the popular Babymouse kids comic book series. Reveal the comic book pictures piece by piece and try to guess the word."

And did I mention the Free part? This is not an introductory dealie, the app will stay free. So if you know someone who has read all the Babymouse books and craves more, consider this an Expanded Universe option, and an opportunity to make that fan's day. But the app is a kick even for those who have somehow never crossed over into the wonderful world of Babymouse.

But don't take my word (heh) for it. Here what a dedicated fan (my daughter, who has played both the iPad and Android versions) has to say:

This Is Autism, on Leo's Terms

Hiking!
With somewhat reluctant sister in background

Today is the This Is Autism Flashblog event, a positivity reframing response to Autism Speak's Suzanne Wright's attempt to frame autism as a national catastrophe.

If you know or read me,  you know I have Big Thoughts on many aspects of autism & autism parenting.  But when it comes to defining autism? That's a highly individualized experience -- which is one reason so many people were outraged by Suzanne Wright's attempt to hijack it.

It's also not my experience. I do not have an autism diagnosis. My son does. So I'll let him show you it's like to be him, to be an intrinsically happy Autistic person. It's not always easy, especially the communication. But he's working on communicating, we're working on that with him, and for the most part he's got a whole lot of joy going on.

For my part, I'm in love with my son, and grateful to be his mother.

 

Video description: Seven mostly very peaceful minutes of Leo hiking in the woods and grasslands. He has occasional Autistic tics and stims. About five minutes in he uses scripted language "We're not going to go back to the car" to let me know that he's not happy about the trail going uphill. I reassure him that he's great, and he uses echolalia "you're great" to acknowledge what I said. At the end he needs me to give him my full attention, and I turn off the camera.

This Dude Will Be Thirteen Tomorrow

This cute little dude will be thirteen tomorrow. To quote Yul Brynner: "How how how?" Those of you who have been reading along over the years -- please tell me you share at least some of my feeling of being hit over the head by time?

We are celebrating with the usual jumpy birthday party with friends, because that is what Leo likes. There will be cupcakes and pizza for the same reason.

We will also give him a few presents. But mostly we are using this milestone to acknowledge that our boy is become a teenage dude, and no longer a little kid. So while one of his presents is a Monsters University DVD, another is a room makeover -- working with him, asking him about taking down the stamper paint 1-2-3 posters he made years ago (he said yes) and putting up a Star Tours poster instead. Removing the colored, preschool-style toy bins and replacing them with clean white shelves for relocating some of those toys. Replacing cutesy puppy sheets with cozy red fleece ones.

Nothing is going away permanently, not at first. We'll store most of his kiddie stuff in the garage for a while, in case he asks for it. Because he does that, sometimes, and knowing things are retrievable is reassuring way for him to manage transitions. Pluse these changes are hard for all of us, especially sentimental mothers who wish their kids could stay kids just a little longer.

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If you'd like to honor Leo's 13th birthday, his school would be most grateful for a donation of any size. Just click through to the school site and click the Donate button. Thank you.

Next Time You're Shopping in Accra...

I really must write more about our trip to Ghana. You know, the one we took in June. One thing I will say: The next time you find yourself in Accra and in need of beautiful clothing and handicrafts, go to the Accra Arts Center and look for these two fine gentlemen:

Asamoah Jones sells excellent clothing, with a wide range of options for men, women, and children.  His shop number is #83, near the center of the main building.

Ras Emma has his own large stall behind the main building, and sells wooden and other handicrafts. It was through him that we acquired a beautiful djembe (drum) and kalimba (thumb piano). His shop is #159.

My daughter is already asking when we can go back. Soon, I hope. Though the fact that we were able to go at all makes the experience seem like a dream.